Happy 20th Birthday, Sophie!

My heart is full. Twenty years ago, you made me a mother. The years have flown by with bewildering speed, and they've inched forward, too, agonizing for both of us. Always, though, you, with grace. How blessed am I. How blessed are thee. A mermaid swimming out of me and away, a flicker of tail, swish.



The Cloths of Heaven

HAD I the heavens’ embroidered cloths,
Enwrought with golden and silver light,
The blue and the dim and the dark cloths
Of night and light and the half light,
I would spread the cloths under your feet:
But I, being poor, have only my dreams;
I have spread my dreams under your feet;
Tread softly because you tread on my dreams. 

William Butler Yeats

Anatomy of an EEG

Sophie fought from the very first moment. I can't count the number of EEGs that we've put her through, but this might top them all as the worst or the one that she fought the most. Maybe it's because she's on fewer drugs and has more wherewithal to protest. Maybe it's because she's even more sick of it all than I.

Reinforcements were brought in. This is Rosie, The Reinforcer. She put her arms in braces so she couldn't flail or hit us with them. I would have cried, but instead I made dark and bitter jokes and alternated with murmured words of comfort to Sophie even as I pressed my fingers into her tiny hands and lay my legs across her lap.

They got the job done with my help and an extraordinary effort by Oliver. If I even began to tell you how much Oliver helped us, I might dissolve into a puddle of tears.

I hesitated to put these photos up -- even on Facebook, which I did last night. Then I decided that it'll only increase awareness for how miserable this disease is for not just Sophie, but for all the kids and adults like her, for their siblings and for their parents. My fellow epilepsy peeps -- I'm not sure how we do it, but we do it.

I am perhaps going to exist forever on the samsara wheel that is epilepsy because I hate it with all my heart. I hate all of this shit. Resistance comes and goes, and yesterday, it came.

Oliver asked what we were going to do with the information gathered by the EEG.

I said, Nothing.

A friend texted me this question:

I swear there have been no advances in the technology of neurology in forever. why the fuck do they not have a better way to do this yet?

I don't have an answer for that, and Spock died last week at the age of 83.

Sometimes, if I'm lucky, despair morphs into anger and then humor. Last night, I lay on my side in front of the video EEG monitor and noticed that Sophie looked like a saint, and unlike all other cameras, it actually made me look thin and even exotic.

Not to mention, terrifying.

The New Sheriff in Town

She drinks wine while cooking dinner.

I slapped a Jimi Hendrix stamp on the mortgage payment this morning and felt cheered. Take that, I muttered, with a circus mind that's running wild. I also carried on a very long text conversation with a friend across the country. Sexy Norwegians, truck-stops, Jesus Christ and manifestations were involved. 

Little Wing

How We Do It: Part LIII

So, it's Women's History Month, I think, or something like that. I'm not one for the holiday marker on a day. It's enough sometimes, just to get through them, much less mark them. This is also the last week that Sophie is in her teen years. She'll be twenty years old on Sunday. I used to have muscle memory of each year that passed. I remember the sixth was a particularly difficult one. The Husband a few years before had said confidently, I think she'll be talking at six. Even before that, though, some magazine like Time had a picture of a window on the cover of an issue about brains, and somewhere inside some scientist stated that the window slammed shut at three years old. Those years are blurry to me, now, except when they're not. The muscles have atrophied. I might be making up the cover of the magazine, but I'm not making up the window. I heard it slamming for years before They (it's always They, isn't it?) discovered it actually stays open well into Old Agedom. I think the tenth year was another one where the muscles ached. Sophie was sick then, so sick. I didn't think she'd live. There might have been some muscle aching at twelve and maybe some temporary paralysis at fifteen, and every year in between and afterward seemed a cause for celebration. There was incredulity for each one, though, and not a small amount of gratitude. My muscles don't seem to have memory now like they used to. I've always hated to exercise. So, Sophie will be twenty years old on Sunday. The window is open, and it looks beautiful outside.

The Weighing

The heart’s reasons
seen clearly,
even the hardest
will carry
its whip-marks and sadness
and must be forgiven.

As the drought-starved
eland forgives
the drought-starved lion
who finally takes her,
enters willingly then
the life she cannot refuse,
and is lion, is fed,
and does not remember the other.

So few grains of happiness
measured against all the dark
and still the scales balance.

The world asks of us
only the strength we have and we give it.
Then it asks more, and we give it.

Jane Hirshfield

A Woman Crude As Any

I took a walk today and looked at Icelandic* poppies sprinkled everywhere, some still with fuzzy heads bowed and others with papery petals in sorbet colors open to the sky. I don't know why it's so hard to get up and out of my pajamas every morning these days, to shake out and up my mind and body. Everything points to the natural world, to air and sky and flower and tree as remedy for what ails the spirit, but I can't say that I'm even remotely disciplined when it comes to acknowledging it.



A Warning to My Readers

Do not think me gentle
because I speak in praise
of gentleness, or elegant
because I honor the grace
that keeps this world. I am
a man crude as any,
gross of speech, intolerant,
stubborn, angry, full
of fits and furies. That I
may have spoken well
at times, is not natural.
A wonder is what it is.

-Wendell Berry

*A friend pointed out that these are probably Icelandic, not California poppies, so if you read an earlier version, I stand corrected! 

Boy Talk, Part 468: On Inspiration

Quick, take a picture of that! I said to Oliver when we pulled up to a stoplight before entering the Target parking garage.

Why, Mom? he replied, Why do you need a photo of a homeless guy's stuff?

Well, to tell you the truth, I am inspired by the things that I see and then the photos that I take, I replied, I'll often take a photo and then look at it later and write off of it. 

I waxed inspirational, then, the kind of blather that I'm sure my boys tolerate only by the skin of their teeth. I think I mentioned the video of the homeless man that I'd watched last night, like tens of millions of other people -- the one where a homeless man on Skid Row in downtown Los Angeles is shot dead while being "subdued" by six LAPD. I can't tell you, Reader, how frenzied I felt while watching that video last night. My heart was literally pounding, and while the boys watched over my shoulder, I might have even screamed how much I hated guns and cops and this whole country. I went on and on, basically freaking out about the fact that thousands of people, many of them mentally ill, live in squalor on the streets even as people drive past in cars that cost hundreds of thousands of dollars, blather, blather, blather. I might have cried, openly, I was so upset. But that was last night, and when I saw crap strewn all over the street outside of Target, I immediately thought of the video and knew that I wanted to write about it, somehow, if only to struggle with my own ineffectual place in all of this. Because, really, who am I to hate this situation and have no real power and even, sometimes, inclination, to actually do something about it. To tell you the truth, I feel like an asshole for complaining without a means to really help.

Today, I didn't say any of that -- I just made the comment about inspiration and writing and creativity when Oliver asked me why I wanted a photo.

You're a creative person, I said, what gives you ideas and inspires you? He thought for a moment, and then turned the dial of the radio up nearly all the way as we drove underground into the parking garage. All the Single Ladies was blaring out of the speakers in my sexy white Mazda, and I instinctively turned it down as low as it had been turned up. Let's face it, Reader, I'm not a Beyonce fan.

Mom! Oliver cried out and turned the knob back up. You don't turn DOWN Beyonce, you turn her UP. THAT'S what inspires me! He started dancing and bobbing in the seat next to me, doing his moves, and I was inspired, Reader, to actually join him.

The Italians

I've had two very long conversations with my father recently when we've discussed, among other things, the new PBS four-part special The Italians. I've only seen the first part which chronicles the years in the nineteenth and early twentieth centuries when millions of southern Italians immigrated to the United States. I confess to being ignorant about the incredible contributions Italian-Americans made to this country. I was even ignorant of Italy's history -- how it really wasn't a country until Garibaldi "united it" in the late nineteenth century. It's a fascinating documentary and confirms many of the stories that have been handed down to me from my father and his brothers and sisters, my aunts and uncles and cousins. I've posted the photo above of my grandmother Josephine when she was a young woman, and I'm struck again by her penetrating gaze, her eyebrows, the carefully-placed choker and long strand of beads or rosary (I can't tell) hanging down her dress. My nonna was illiterate and came to this country with two children. She'd have three more (my aunt, father and his twin brother), and she'd never learn to read or write or even become a United States citizen despite living here for more than fifty years. Yet, she so very much lives on in me, in my children, in the stories that we continue to tell and even see on specials like The Italians. It's amazing to me how much has changed in such a short time -- that only a couple of generations before mine, my family was tilling other people's fields, scrabbling by on literally nothing, making grueling sacrifices and setting out on journeys to places utterly foreign to them and then making new lives. I found myself scanning the photos and video footage of the documentary, looking for "people I know." My father joked that many of the people were his mother. We spoke about la famigilia, about secrecy and mistrust of authority that linger even today in parts of our extended family. We talked about the similarities of immigrant experience today -- how vilified certain immigrant groups continue to be. I look forward to watching the rest of the series and learning more about my family's immigrant experience and the history of Italian-Americans. Even if you're not Italian, I encourage you to watch them.

Sunday Thoughts

We must become intimate with anger to clear the way to our connectiveness, to our vulnerability and an aliveness to everything. In the end, our anger is transmuted to wisdom, which in turn gives rise to compassion.

from Holding Anger, by Jules Shuzen Harris, Sensei in Tricycle Magazine

Last night I spoke on the phone for hours with my oldest friend, Audrey, who lost her husband on New Year's Day of a terrible neuro-degenerative disease, supra-nuclear palsy. We laughed together -- a lot -- even as we talked about overwhelmingly sad things, and I was struck by our long connection to one another, how comfortable it was to lie on my bed and listen to her familiar voice tell me stories, the story of her husband, his illness, his final days, her children's remarkable compassion, her own strength and ability to recognize her failings, the extraordinary love she carries and projects.  It's these things that tie me to the world.

I read Timothy Kudo's  beautiful Op-Ed piece How We Learned to Kill  and felt the sour taste of anger rise like bile in my throat, the absurdity of all of it.

I read the above quoted article about anger this morning and wondered where I was on the journey referenced -- intimacy -- connectiveness -- vulnerability -- aliveness -- wisdom -- compassion. Perhaps, like grief, these things come and they go, get mixed up with laughter, a sense of absurdity, even desperation, and then grounding.

Laissez-faire Parenting, Part 435: Boy Talk

As we drove around the shitty today, I listened to Oliver chattering endlessly about the cars we passed, and I nodded my head while maneuvering the sexy Mazda and turned toward him at the stoplight when it turned red. You've got something black in your teeth, I said to him, and then like a reflex, have you brushed your teeth today? (it was late afternoon, and the sky ahead was pinking up for sunset). And then he said in a very good-natured tone, not at all miffed or even with the customary annoyance -- actually quite to the contrary -- but rather proudly, I've actually brushed my teeth at least once a day for about two weeks straight! Reader, he waited a beat, a beat that I thought was for me to fill in with the usual parenting jargon about teeth-brushing and hygiene, the beat that his brother, if present would have filled with You're a disgusting pig, but before I could begin, the light turned green, I had turned my head back to the road and simultaneously realized that we were both supposed to feel good about this diligence on his part. I used to NEVER brush my teeth! he said as I smoothly drove the sexy Mazda forward, and then he turned his head out the window and commented on the baller Tesla that roared by us.

Books & Bakes February

photo by Sir Cecil Beaton, 1938

If you squint, don't I sort of, kind of, look like Gertrude? I even have a poodle! My Alice B. Toklas is Mirtha (just the cooking part), and I'm getting ready to have another group over to discuss Monique Truong's novel The Book of Salt. Because the book is about a Vietnamese chef who works for the legendary couple, our menu is both French and Vietnamese. We'll start with Pate and Gherkins and French cheese and crackers while sipping on a French rose. Dinner is a Vietnamese Noodle Salad with Shrimp, Beef or Vegetable Pho and Tofu Bahn Mi. For dessert I've shined up my rusty French pastry skills (another life) and made a Vacherin with Berries and some Ginger Black Peppercorn French Ice Cream. I won't divulge what happened to my first meringue.  Did it burn in our ancient oven that predates Gertrude herself? I'll never tell. I told you that I'm rusty, a far cry from this gal who cooked in a four-star New York City restaurant back in the day under one of those maniacal pastry chefs you read about and an equally maniacal French-Swiss-Hong Kong chef who yelled so much, his white face turned pink and his tall chef's hat nearly blew off with the steam from it. Never at me, though. Never.

The ice-cream base nearly boiled over, too, but I saved it in the nick of time, and it's now sitting in an ice bath, slices of ginger and tiny multi-colored peppercorns steeping away. Oh, la, la.

Wish you were here.

Intimidating Words, Part Two

Skeletal and labyrinthine

Pharmacoresistant:
(from Dictionary.com)

Did you mean pharmaco-?

More suggestions:

Epileptogenesis:
(from Dictionary.com)

There are no results for: epileptogenesis, but we are adding new words daily.

Here are some of our most recent additions:

• metacognition
• epigenetics
• tranche
• digital divide
• nano
• declutter
• paradigm shift
• confusticate
• aha moment
• workaround
• eco
• munge
• artisanal
• exoplanet
• aggregator
• ultracrepidarian
• input device
• multiversa
• kaizen
• pixelate

1. 
   

I received an email from MedScape this morning with Targeting Pharmacoresistant Epilepsy and Epileptogenesis in the subject line. This was the exact title of the article referenced, and I shrank when I saw it. My mind wanders to wondering. The names for drugs and the words cobbled together by the Science Powers That Be make me squirm. I can't find their definitions in the dictionary. There are, apparently, not even suggestions for these words or even substitutes. I do like the word confusticate, as referenced above. It means to confuse or perplex; bewilder. 

Epileptogenesis is the gradual process by which a normal brain develops epilepsy. Pharmacoresistant epilepsy can be practically defined as failure to achieve seizure freedom following adequate trials of two tolerated and appropriately chosen AEDs.

The weight of metaphor. 

Oh, to be a person who embraces literalism.

literalism

[lit-er-uh-liz-uh m] 

 

• Word Origin

noun

1.

adherence to the exact letter or the literal sense, as in translation orinterpretation:

to interpret the law with uncompromising literalism.

2.

a peculiarity of expression resulting from this:

The work is studded with these obtuse literalisms.

3.

exact representation or portrayal, without idealization, as in art orliterature:

a literalism more appropriate to journalism than to the novel.

I love the word skeletal. I love the word labyrinthine. Our Chinese flame tree has finally dropped all but a few clumps of brown leaves, and its branches reach up to the blue sky and cast skeletal shadows on the grass, the patterns labyrinthine.

I hate the word pharmacoresistant. I hate the word epileptogenesis. Sophie's seizures resist a vast pharmacy of chemicals, and the gradual process by which she acquired epilepsy - - the epileptogenesis and resultant pharmacoresistance  -- have stripped me to the bone, rendered me skeletal, clanking and clinking the labyrinthine paths.





Intimidating Words, Part 1

Cannabis Questions Answered

Is Sophie still taking the same amount of Charlotte's Web, and how much does she take? Is it working? Is it a miracle? Do you think marijuana should be legalized? 

I think I mentioned a while back that I don't like calling any treatment that's been around for thousands of years and whose efficacy was basically hidden from the public because of politics a miracle.  A miracle is defined as a surprising and welcome event that is not explicable by natural or scientific laws and is therefore considered to be the work of a divine agency. I guess you could say that a miracle is also a wonder or a marvel, but when people start ascribing it to the supernatural or say that God gave us the plant -- well -- forgive my squirminess. I'm not a believer in that way. I just don't buy that God made the plant available to Sophie and not to someone like her in -- let's say -- Georgia, because She wanted a bunch of politicians to be arguing over who gets it and who doesn't and then somehow see the light and further glorify Her name by agreeing it might be helpful to some kids but only some kids and not all kids and certainly not with any of that funny stuff in it. Yesterday, I heard the mother of the American Sniper wailing on the radio and praising God for meting out justice to the sick soul of the soldier that shot her son to death by giving him a sentence of life without parole. At risk of sounding heretical or even offending someone, I wondered from the safety of my sexy Mazda where I was listening to this woman praise her God, if God had approved of her son killing those 166 people over in that evidently godforsaken country and then thought better of it and placed her son in the path of the other soldier who righted that wrong and then determined that he'd need to go to jail for a while and think about that and --- where was I?

The miracle. The answer to the question.

Sophie is now taking less Charlotte's Web Hemp Oil (CWHO) than she was last year, a tiny amount, really, and is on close to 50% less benzo than she had been when we began weaning in June of last year. The ratio of cannabis to THC in CWHO is approximately 26:1, and we have found that the coconut oil base is easier on her stomach. It appears that for many people taking cannabis, a smaller amount is better. So unAmerican, right? We have not added any THCa, or THC, something that many of the kids with epilepsy are taking to help seizure control (and something that God has determined should not be available in many states because of its psychoactive properties), but at least for the moment have tweaked the dosage to about the right point and are happy with the results. We believe the lower amount of benzo is allowing the cannabis to do its work and hope that as we continue to wean the drug --- slowly, slowly, slowly -- she'll continue to do better and better. This is touchy stuff, folks, and it's difficult to figure out. I know of many people whose kids are doing very well with cannabis, and I know some people whose kids are not doing so well or who have even seen a worsening of their symptoms. I think the combination of multiple anti-epileptic drugs and the exquisitely unique brain chemistry of each person make determining whether cannabis will or can help to control seizures very complex, but I believe fervently that every person should have the opportunity to try it and tinker with it. I also believe in legalizing marijuana in all forms and rescheduling it. Pronto.




Sophie is good. She's really good!

She's good right now, and that's a marvel and a wonder for which I'm very, very grateful. The universe is abundant.

Homeschool PE at the Beach and Just Enough Snow

Oliver and I went for a very long walk today in Santa Monica. It was a blustery day and incredibly beautiful. He actually skateboarded while I walked briskly, and I called it Home-school Physical Education. My sister, who lives in St. Louis, texted me the question how is the homeschool thing going? The meaty stuff?

I told her great. I told her that we would be doing another unit of history when we got home and then some English Language Arts. The more I do this, though, the more I realize that it might be the best way to educate, even to live. I wake up every morning in some bit of existential distress. What's it all about? I think. How do we keep on keeping on? There's so much suffering. I'm getting old. What if Sophie lives forever? What if I do? What if I don't? What if the world melts? What if the Republicans win in 2016? How will I afford college for Henry? Who's going to take care of this world? How do we go on? Why are we so lame? You know the drill. After working with Oliver, though, and learning myself, going on these outings, opening my eyes to the very real goodness that is my life, the existential angst recedes. I move outward, see blue.

On the way home, we faced the mountains, covered in snow. I decided that was all the snow I needed to see at just the right distance.

#IloveLosAngeles

Betweenpie mountains

He dressed for Hopkins that morning and sat alone at the Greek cafe in Beverly Hills, reading of Jackself and thwarted passion, the ice in his glass melting. He waited for pie.





My own heart let me more have pity on; let
Me live to my sad self hereafter kind,
Charitable; not live this tormented mind
With this tormented mind tormenting yet.
I cast for comfort I can no more get
By groping round my comfortless, than blind
Eyes in their dark can day or thirst can find
Thirst's all-in-all in all a world of wet.

Soul, self; come, poor Jackself, I do advise
You, jaded, let be; call off thoughts awhile
Elsewhere; leave comfort root-room; let joy size
At God knows when to God knows what; whose smile
's not wrung, see you; unforeseen times rather — as skies
Betweenpie mountains — lights a lovely mile.

Gerard Manley Hopkins